NanaJane
Forum Replies Created
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Thanks for this article – I have been wondering about some of these possible irritants. I needed a haircut this week and went by my usual walk-in salon about 4:30 the other day. As soon as I poked my head in the door the smells of the sprays, gels and dyes was overwhelming. I went home and called my favorite hairdresser there and she agreed to meet me right at 9:00 the next morning when they open and the air would be much cleaner. That worked perfectly. Have had to forego the nail salons completely.
I was only using masks when outdoors since I have allergies to pine needles and moldy leaves (which are everywhere in the American southeast!) but now I will keep some in the car for pumping gas etc.
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I’m glad you switched hospice services Megan. I’ve been through end of life with both parents in hospice and want to let everyone know that they are not all created equally. If you are unsatisfied with one service, look for another.
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I asked this question somewhere else and then found this forum topic. I was diagnosed with Advanced Small Cell Lung Cancer that had spread to my liver exactly one year ago. This looked devastating and fatal at the time but somehow it was easier to tell people that I had SCLC – at least they knew what it was and realized without my saying it that I was probably terminally ill. Immunotherapy and chemo from January to July successfully treated that however, and I was suddenly reporting that I was in really good shape and went on vacation. We were all very relieved. Then the coughing and shortness of breath started and by late September I knew something else was wrong. A closer look at my CTscans from the past year showed that I had some minor PF (and probably had had it for years due to a previous work environment) but no one had looked that closely during my cancer treatment. They were focused on the tumor which was much more obvious but once we looked we could see it blossoming each six weeks. My Dr. explained that the treatment had actually kick-started the IPF as my immune system focused on the cancer cells. So in October I had to go back to friends and family and deliver the bad news of IPF. It’s been a roller coaster for all of us! I tried to soft-pedal it with friends but because there is nothing else wrong with me and I look like a healthy, active 71 yr. old, they couldn’t understand when I begged off activities and started curtailing my participation on committees, weekends at the beach, etc. As I try to explain that I am truly seriously ill and have a shortened life ahead, many don’t hear that message and I find myself constantly having to say no to unrealistic invitations.
I’ve always been a happy, optimistic person and feel a lot like Karl that I will do as much as I can but that I know there is an end in sight and that’s just the way it is. As I’m learning more about how to live with this my Dr. and I are making choices that value quality of life over quantity – I am on Cell-Cept and Azithromycin just to control the symptoms and possibly slow the progression but at the “severe” stage I’m not interested in trying the other drugs. After six weeks my cough is slowly getting less troublesome and I can actually take somewhat deeper breaths. I’ve asked two good friends who are retired medical folks to take over the job of explaining to others who insist on denying the reality. That’s helpful….
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I’m unsure about the best way to conduct a support group but am willing to try all the suggested ways. I agree that nutrition is an important subject. I live alone and find that feeding myself well is a real challenge. Others bring me meals a couple of times a week but I fall back to the “cereal for dinner” habit much more than I should. I also have questions about exercise – being on oxygen if I exert myself for more than three minutes seems to limit what I can do – would love suggestions of what others do. Don’t know how much I should push myself…. Another conversation would be how to talk to others about our disease. I need a good elevator speech that’s not the voice of death but gets the point across that I am quite seriously ill even though I look perfectly normal. I am so grateful for this forum and look forward to sharing with all of you in any way…I’m in Chapel Hill, NC and a patient at UNC – anyone else nearby?
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Hi Sandra – I’ve just joined this forum and it’s so nice to receive a your message. I am on oxygen at night and anytime I am active for more than 5 minutes during the day. Fortunately a friend loaned ma a portable concentrator so I was able to go get a haircut yesterday and will go to dinner at a friend’s tonight. I’m finding all of this a bit overwhelming but I am reassured by the things I read here that I can adjust to a new lifestyle that will still allow me to do the things I enjoy most. I can’t imagine deciding to go for a transplant – I admire your courage to do that and will keep you in my thoughts as you progress through that process!
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Hi all –
I’m actually a bit grateful for IPF since it has forced me to resign from committees, slow down and try to take each day by itself. I’ve played around with watercolor and sketching and also textile collage for several years but always felt that it was a waste of good time. Now I can stay in my workroom for hours just puttering around on a project with no guilt that I should be doing something more productive and I get great joy from being creative!
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Hi Charlene –
I use a smart phone app called CALM. It provides guided meditations, white noise choices and music but my favorite piece is the Sleeptime Stories section. It offers a large variety of 30 – 40 minute stories narrated by folks with calm, quiet voices. You choose the story you want, snuggle into your pillow and covers, start the story, lock your screen, put the phone on the bedside table and close your eyes. As the story progresses the volume level decreases. When the story ends your phone turns off. I rarely am still awake to hear the end of the story! It also worked beautifully on my grandchildren on Christmas Eve LOL !
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Thinking about you Sandra. Hope your meeting with the surgeon went well. Best, Jane